A Letter to Communication Supporters

Tonight I got back from Philip's school open house wondering how I could help Philip's teachers maximize their success with supporting Philip in his communication methods at school.  At school Philip uses both a letterboard and a bluetooth keyboard for an iPad to communicate with his teachers.  He communicates with his lead teacher, a speech pathologist, a teacher's assistant, and 2 classroom aides.  As to be expected, his teachers vary in their ability to work with Philip.  With one teacher, Philip can produce sentences.  For a few, he types 1-2 word responses.  And with the brand new aide, he is still struggling to even get a word out.  Some days he is better than others.  What were the reasons for this, we all wondered.  How could Philip better show what he knows with different people and with better consistency?

When I got home, it was already 9 in the evening.  I asked Philip if he wanted to write a letter to his teachers to explain how they could best support him.  I gave him the option to write it tomorrow, but he wanted to write it now.  It was that important to him.  I thought Philip's letter was very insightful and asked if he would like to share it on his blog as it might help others in a similar situation.  "Yes," he typed.  So here it is... (typing is kept as is from his Assistive Express App)

dear teachers, to help support me, you should believe i can do it. hope for the best. try hard to wear each day a daring smile. dare to try reaching me by seating me in some real nice chair. i reallize i am too tiring sometimes. you each will do best if you understand i am trying my hardest. you really don't need to lecture me so much. i am open to erasing stims to answer. to help me drop stims, drop bead of sweat by witholding talking about how trying i am and instead hold me to each task to finish. outwardly i look defiant but i so so much want to open up to you. you have futility when you are unsure of yourselves. i can feel your tension and that blocks me from writing. try to relax with me. you are healing kids from torment of silence when you reach out to me with desire to really get to know me. from, philip

First Day of 6th Grade

 

Speaking Out

by Philip

I am autistic and I want to dare to change ideas about us.  I am reaching out to the world by a lot of ways.  One way is through blogging.  I decided to understand autism best over all experts.  I am autistic and not seeking treatment.  I am tired of seeking ways to eradicate autism.  It each day hurts one autistic too many.  Daring to steer away from torment of talking negatively about autism is the solution.  I assume to stop irresponsible ideas about autism.  The idea that autistics are without feelings is terrible.  It leaves us vulnerable to all kinds of abuse.  I am still traumatized by teachers who would restrain me at my old school.  I so want teachers to understand they hurt autistics when they think we are not smart. 

The idea that we want to be left alone is hurtful too.  Dearth of people idea is depressing.  I very much want to make friends.  I need help with it.  I like listening to kids talk to me.  Each day I sometimes catch myself determined not to let myself get depressed about not talking.  I am determined to listen to my new teachers so I can make friends (talking with my letterboard).  

Another wrong idea is to extinguish stims.  Stims relax us from sensory overload.  I can function better if I stim.  If I couldn’t stim, I wouldn’t be able to mute the distracting sounds like the refrigerator noise or from the surroundings.  Isn’t it nonsense to think we stim for no reason? 

I am happy to be each day at (my new school).  There they treat me with respect and love.  I think autistics need more acceptance and less therapy.  I think open-ended communication techniques should be emphasized.  RPM taught me to understand myself and stop storing sorrow in me.  I am thankful to Soma and Mom for talking to me and helping me understand the world better.  I want to tell parents not to give up on their kids.  It is tragic not to have a voice.      

Empathy in Autism

We all need empathy and support.  Last July, I wrote of my own need for support which I have graciously received from my support group (click here to read).  Last week, Philip was able to receive some much needed support himself.  As I learn more about autism from my son and other autistics, I am realizing over and over again how much more similar we are than different.  The common ideas that autistics lack empathy and do not desire relationships are just not true.  The problems with socialization do not stem from a lack of desire, but rather from the impairments that come from the different neural wiring that is autism.  These include lack of effective speech or communication, poor motor and impulse control, difficulty regulating emotions, and sensory overload.  In Philip’s case, his self-consciousness of his disabilities compound to make socializing even more difficult.  But even though socializing is a challenge, Philip has expressed how much he enjoys other people and longs for relationships.

This year has been a landmark year in so many ways.  Philip has been making connections with people like never before.  He has playdates with both autistic and neurotypical peers,  participates in activities such as gymnastics and Stockade (scouts) with other kids,  converses with family and people in the community, shares his ideas on his blog and responds to people’s emails, and even writes letters to his pen pal from our church.

A couple weeks ago, Philip wrote this post on Autism and Trials (click here for the complete post).  It read:

I am in pain all the time. 

I hear every sound at one volume.
I see people’s taunts and I am fearful.  (When asked what he meant by taunts, he spelled “angry faces.”)
I am each day made to feel like I am not intelligent.
I am each day made to feel I do not matter.
Often I am so terrified of senses too aroused.
I am tired of attacking stims all the time.
I each day have strong emotions that affect my relationship with each person.
I each day need someone so patient to work with me.
Each day is so hard.  
The end.

 

By sharing his heart, Philip was able to be the recipient of amazing empathy and support.  I post our blog on Facebook and many people commented with words of understanding, encouragement, and kindness.  I shared these comments with Philip and they made him so happy.  

One particular response was especially moving and remarkable.  I have obtained permission from the family to blog about it.  A 15-year old boy from England named Christopher has also been using RPM as a method for communication.  Like Philip, he is non-verbal.  His mother Sue shared Philip’s words with Christopher.   Letter-by-letter, Christopher then spelled out a response just for Philip.  All of this was video recorded and posted on facebook for us.  In the morning, Philip and I watched the video as we ate breakfast.  Here is Christopher’s response:

Click here if video does not show.

Christopher: I THINK HE SHOULD TELL HIS MUM WHEN PEOPLE STARE 

Sue:  And what should his mum do? 

Christopher:  TELL THEM ABOUT HIS AUTISM AND EXPLAIN HOW IT AFFECTS HIS BODY CONTROL.   

Sue noted how it was interesting that during their conversation Christopher was having difficulty controlling his body, biting his hand, bouncing against his ball, getting up, and grabbing her.  Philip had similarly been upset as he wrote his post about his trials.  I believe Christopher’s actions were a sign of empathy.  As I watched the video, I could clearly see he was upset for Philip, that he knew what it felt like too.  

Philip silently watched the video as he ate his breakfast.  You could see he was connecting to this boy who was literally an ocean away, yet seemed so close.  After the video, I asked Philip what he thought.  He replied in spelling, “I AM EXCITED THAT SOMEONE UNDERSTANDS ME.” 

It is an exciting time to see how communication through RPM has opened the doors for relationships and understanding in so many ways.  As a mother, it makes my heart soar to see Philip becoming more and more embraced by a community who accepts, loves, and supports him.  To see Philip making friends and connecting with others near and far is a joy I could never have imagined before RPM.  It is my hope that all autistic people may have this same opportunity that Philip and Christopher have.   

* Philip's addendum- "I am each day part of a coming-together community of non-verbal autistics.  I am excited about activism.  I want to change the way we are taught.  I want to make RPM the standard."  

 Philip and his friend Kaylie making cookies

International RPM Community

Yesterday I was contacted by Sue, a woman from the UK, who started a Facebook page dedicated to RPMers around the world.  It was originally for a group in the UK and Ireland, but since she has gotten a lot of interest from Americans, she took the "UK" off the name yesterday.  She found my blog through the Halo-Soma site and wanted to get my permission to post it on the group site.  I was excited for the opportunity.  It has been my mission all along to help people through my blog, whether by changing misconceptions about autism, introducing RPM to other parents, or supporting and encouraging people already using RPM.  I chose the title Faith, Hope, Love…with Autism for many reasons.  One being that God has taught me more about these gifts through Philip than any other avenue in my life.  Another reason is that since starting RPM, I have been able to have more faith in my son, a renewed hope for his future, and an understanding that has allowed me to better demonstrate my love for Philip and others like him.

I have received a few requests from people wanting to know how I started RPM and progressed to where Philip is now.  

I first learned about RPM from Laurie, a woman in my autism support group.  I was initially skeptical but tried to investigate it on my own by reading Soma’s book and trying to replicate what I saw on Laurie’s RPM camp video.  That was not enough to get me anywhere so I stopped.  About a year later, I met Susan, whose son Michael had been doing RPM for a few years.  She showed me his letters to his classmates in regular middle school and videos showing him communicating with humor and intelligence.  She leant me the books “I Am in Here,” and “The Golden Hat.”  She told me to watch the movie A Mother’s Courage, which I did.  It made a huge impression on me.  That was enough to get me to register for my first camp with Soma in October 2012.  

The camp was the most wonderful experience.  We started to see Philip as being intelligent and capable.  He was answering questions about grade level material correctly, spelling, and even expressed what he wanted for Christmas for the first time in his life: a radio.  That week, I felt as if my son was reborn.

Returning from camp was hard.  After the initial high of going to camp and showing our family and friends Philip’s videos, a low would soon follow.  I found myself overwhelmed with trying to do what Soma did.  I didn’t know where we would work, what we would study, or how to go through a session without stumbling through it. Philip would not sit at a regular table at first.  He would slide below it or run out of his chair.  My dad had some old office dividers that he kept after he retired, so he gave them to me to make an enclosed 4x4 ft workspace.  I bought an adjustable table where we could work.  I went to my nearest bookstore and bought a comprehensive second grade curriculum workbook and used my second grade daughter’s school papers to come up with lessons (Philip should have been 4^th grade but I wasn’t sure he was ready after having done preschool work all his life).  Lessons with Philip were initially tough.  He would often resist by standing on his chair or biting his pencil.  I eventually had him point because he was ruining so many pencils!  Sometimes I would follow him around the room with all my paper and there would be ripped choices all over the floor.  

Philip went through a ladder of progression in his skills.  The first month we spent just picking from choices.  Philip would even have trouble with that.  Sometimes he would just pick from one side.  Sometimes he consistently picked the wrong choice!  I experimented with placing the pieces of paper farther apart, tapping on the choices, holding them up, and making one choice completely absurd.  Eventually he got it.  Once he was more consistent with choices, I moved onto picking the choice and then spelling it.  We used the 3 large stencils at first.  I would say the spelling in a sing-song voice just as Soma did at camp.  “W for winter, I for inter, N for nter, E for er, R for r.”  I noticed Philip became good at spelling for academic subjects pretty quickly.  We were able to fade the paper choices and move to the 26-letter stencil pretty easily, but we’d go back to the choices and 3-stencil set if he got tired or started answering wrongly.  However, he wouldn’t answer open ended questions for the longest time.  Between our first camp and our second which was 7 months later, Philip probably only answered 5 open ended questions.  Another thing that took awhile for Philip to click was math.  He would often point to the last number he heard.  If I asked “what is 7+3,” he would point to 3.  If I asked him to point to 23, he would point to 3, then 2.  For some reason, a breakthrough in math came only when, at the suggestion of my friend Susan, I put a few random coins on the table and asked him the value.  He astounded me by coming up with the right value!  Susan had told me her son Michael preferred a challenge and even told her to start at a higher level and then come down if needed, rather than start at too low a level.  That seemed to apply to Philip too.  Once Philip’s teacher sent home a list of spelling words.  They were easy words like cat and tree.  He spelled the first 2 words on the list correctly, but then started pointing to random letters by the third word.  I decided to give him riddles about the words instead.  Only then did he resume spelling the words correctly.  By the time we saw Soma the second time, Philip was very good at spelling one word answers for academic lessons.  He was still inconsistent in math and open ended questions.

The second time Philip saw Soma was in May of 2013 during a workshop my support group organized in Buffalo, NY.  Again, Philip astounded us by spelling in sentences, making conversation, and even writing a story.  He started multiplication with Soma and picked it up in minutes.  One morning Philip spelled with Soma, “I AM IN A GOOD EARLY MORNING MOOD.”  “What does that make you want to do?” asked Soma.  “TALK,” spelled Philip.  “With your voice?” “YES.” 

I believe Soma has the rare gift of opening the window of a child’s potential so we can get a glimpse of the true person inside.  She gives one hope to work hard to not only keep the window open, but to open it further.  As we started working with Philip after the second meeting with Soma, I stepped up what I had been doing.  I now give him more challenging work at grade level.  I ask him what he wants to talk about.  He actually likes to talk about autism- a lot.  My faith in Philip has grown.  I treat him as smart, capable, and having much to teach me and others.  I have started exposing him to experiences I would have never tried in the past- having a playdate with kids both autistic and neurotypical, conversing on his letterboard with someone at church, including him in dinner conversation with the extended family.  Philip has risen to the occasion each time.  I now give Philip power over this blog.  He knows our mission and he proofreads and gives final approval of everything I post.                     

I feel truly blessed to be a part of an international autism community practicing RPM.  We need to work together to spur each other on to continue the progress in each of our kids.  In addition we have the awesome privilege of being agents of change in how the world sees autism and how we can provide real help and hope to those whose voices are unheard.  

 

Philip's first visit with Soma Oct. 2012

 

Philip's first office.  We had to start with minimal distractions. We are now able to do RPM anywhere, but our preference is now the dining room table.

Stories That Matter Most

I am looking forward to receiving a new book in the mail soon called The Reason I Jump by Naoki Higashida.  A fascinating excerpt from the book can be read in Parade magazine here.  I first learned of Higashida from the wonderful film Wretches and Jabberers.  You can see the trailer here.  The Reason I Jump was written by a Japanese autistic boy when he was 13.  It has only recently been translated to Engilsh by KA Yoshida and David Mitchell, a husband and wife with an autistic son of their own (Higashida is now in his 20s).  According to early reviews, this book was eloquently and painstakingly written letter by letter on a letterboard, much like the one Philip uses.  (Higashida now types and can even read back verbally what he has written).  The book answers 50 questions about autism such as "why do you jump?" and explodes common views about autism, such as autistics are not interested in people, they do not understand feelings, and they are lost in their own world.  Society has come up with a misguided view of autism largely based on fictional accounts like Rain Man and from the medical establishment (DSM criteria).  It has been hard to get a first-hand account of what autism is like because of the communication problems caused by neurology.  However, in recent years I have started to see non-verbal autistic voices more and more.  The book Ido in Autismland is my favorite to date.  Ido got his start with Soma and has written a collection of essays that deeply resonate with what I believe Philip experiences similarly.  Tito Mukhopadhyay has also written about his life and his perceptions through beautiful poetry.  These autistic voices (who speak through the written language rather than spoken) have shattered my preconceived notions of what autism is. 

Of course now I have my own son to tell me what autism is like.  Philip is only 10 and has been communicating just a short time, so he is not yet as eloquent as Ido, Tito, or Naoki.  But even so, he has been amazing me with his story.  The more I discover who Philip is, the more I realize how wrong my perceptions of him were in the past.

Philip actually wants to talk about autism.  A couple days ago, I was ready to teach Philip a lesson from Brain Pop.  I asked him what animal he would like to learn about.  Instead of choosing, Philip became upset and started to cry and hit his head.  I didn’t know why.  After awhile he calmed down and I asked, “Why were you upset?”  He answered, “I KEEP SAYING I NEED TO TALK ABOUT MY AUTISM.”

So we started the conversation, which also lead me to the idea of having Philip co-blog with me. 

 

Lisa (me): What do you want to talk about?

P: STIMS

L: What can you tell me about stims?

P: A LOT OF STIMS ARE NEEDED TO CONTROL THE AKING (aching).  OFTEN I AM NEEDING STRESS RELIEF.

L: What kind of stress do you have?

P: STRESS CAUSED BY EVERY SOUND.

L: What else can you tell me about stims?

P: A LOT OF STIMS ARE TIME CONSUMING.  I LIKE TO KILL TIME BY WALKING AND THINKING.

L: What do you think about?

P: I THINK ABOUT ANYTHING

L: What are some things you think about?

P: AS YOU ASK I AM EYEING A HAPPY FUTURE.

L: What do you see in your future?

P: I AM TALKING

L: How?  With your voice?  Typing?

P: WITH A PERSON HELPING

Today I also shed tears about a discovery I made about Philip’s ability to use his hands.  In my dining room I have 2 paintings made by Philip when he was just 2 and a half.  I am so glad my mom saved them because at one time his paintings became so numerous I used to throw them away.  I finally had two of them framed when we moved to Buffalo 4 years ago.  They look like paintings of the sky at different times of the day.  Philip also used to color and could draw a face.  For some reason we saw those skills vanish in time to where to this day he cannot even draw a straight line.

Ana and I talked to Philip and Ana asked, “Do you remember when you used to paint and draw?”  Philip replied, “Y.”  “Why don’t you do that anymore?” Ana asked.

P: AT THE TIME I STILL COULD HOLD A PENCIL.

A: What happened?

P: I CAN’T CONTROL EYE AND HAND ANYMORE.

Autism is such a mysterious condition.  I think there is still so much to discover in the future.  Perhaps whole paradigm shifts of viewing it and treating it will come about from all these autistic voices speaking out.  It is a good thing.  Their stories matter most.  Philip reminds me that even though he deals with such hardships, he has his eyes open to a happy future.

 Philip's paintings at 2 and a half years old

 Drawing at age 2

 

Miracles and Answers to Prayer

I cannot recall a day without a struggle or frustration of some sort.  Most days, they are not too bad, but some days they can be so overwhelming and seem so insurmountable all you can do is cry.  I’ve had days I’ve broken down to the ladies in my Bible study so overcome with grief about Philip never improving, frustration that he’d never be toilet trained, and many other things.  I’d wonder if God would ever answer my prayers.  When you are in the midst of a struggle, it is hard to see an end.  It is hard to see how any good can come of it. 

I’ve learned to just pray.  I can’t say I understand the mechanism behind it or how God chooses to answer or what His time frame is, but I can say I HAVE SEEN GOD ANSWER PRAYER AND I HAVE SEEN HIS MIRACLES.  This doesn’t mean that life is now problem free.  But when I am facing another challenge or struggle, I can be encouraged by looking back at how God has carried me through in the past and blessed me over and over again. 

Today my friend Ellie and her son Nelson came over again.  Philip and Nelson played a couple games of UNO and Philip even spelled “CONGRATS” to Nelson after he won.  They chatted a little and then went outside to join Carlos on the trampoline and play soccer.  Ellie told me she was doing some back-to-school shopping and we got on the topic of schooling.  She told me she spent much time praying about where she should send the kids and how Christian Central Academy kept entering her mind daily as well as the scripture, “You do not have because you do not ask.”  When they finally met with the school and asked for help so their three children could attend, they were granted it- a prayer answered!

I then told Ellie some prayers God answered for me- and now I will tell them to you.  These are just a few of the many…

When we were in Miami, during the first year of Philip’s diagnosis, we had a home ABA (Applied Behavioral Analysis) Program.  We had a staff of students trained by a licensed behaviorist named Andrea Holladay.  There were 2 students from the University of Miami and 3 from Miami Springs High School.  The kids took turns coming to our house teaching Philip the basics of learning- sitting at a table, answering to his name, colors, shapes, letters, numbers, imitating, identifying objects and actions, categorizing, the beginnings of speech.  They worked tirelessly with Philip 6 days a week.  Philip learned a lot, but at times it was exhausting managing and training that many people.  At the end of the first year, all my students were graduating and moving on.  I couldn’t bear to think of finding another group of kids, training them again, and starting over.  I prayed and asked God what we should do next.  This is what His answer was:

At the end of the year, not only were my students graduating, but Andrea, our behaviorist, was moving to Lakeland, a town in central Florida.  She told me her friend Juliana Hunt who was also a BCBA (licensed behaviorist) was starting a school.  She gave me Juliana’s card, we hugged, said our goodbyes, and never saw each other again.  Then I dialed Juliana’s number.  It turned out she was starting her school called ISMILE (Institute of Special Minds Interacting in a Learning Environment) at Poinciana United Methodist Church in Miami Springs.  This church was located exactly next door to our house!  We literally would walk 50 ft from our front door and there we were!   Not only that, but the school was affordable and had trained BCBAs as teachers.  Philip had a great 3 years at ISMILE.

Our next miracle took longer in the making.  Who understands God’s timing?  In the Bible God brought about His promise of a son to Abraham many years after he and his wife were of childbearing age.  Abraham was more than 100 years old.  I wonder how agonizing that must have been to have to wait that long.  Yet, in another instance, God answered the prayer of Abraham’s servant to find Isaac a wife even before he finished praying!  

I remember immediately after Philip was diagnosed I told Pastor Van in Miami to please pray for Philip.  He did right then.   During Sunday services, he would often remember to pray for Philip and our family, among other requests, in front of our church body.  I also sent my church in Buffalo a request for Philip to be on the prayer chain.  I included a video that showed what autism was like so they could get a feel of what to pray for.     

It took many years of praying by many people before we got our next miracle- one I had never thought we’d ever get.  My Aunt Maricel is a true prayer warrior.  She has probably prayed even more fervently than me and with stronger faith than me.  She told me she was praying for Philip daily and knew God would heal him.  I would say things like “maybe God is using Philip to teach me patience and maybe he is choosing to answer no to somehow bring me closer to God.”   “No,” Maricel would say, “God will bring Philip good too.  You will see.”

I have had others who have specially prayed for us.  My friend Jean and I have a habit of emailing each other on a regular basis to exchange prayer requests and praises.  At one lunch meeting she told me that as much as she can pray and empathize, perhaps I need to find a support group with other parents going through the same thing.  Her advice, given in love, is what spurred me on to start my current autism support group.  

My Wednesday morning ladies’ Bible study has been instrumental in lifting us up in prayer.  Nichole, Deb, Connie, Paula, and Maricel have been my front line of prayer.  Kit, Lena, Jen, Janette, Amanda, Eun Kyoung, Betty, Kim, and Leigh have also prayed for us.  Our Bible study meets and prays every week.  There are so many requests we have brought to God and seen remarkable answers.  We have prayed people through cancer, job searches, adoption, tragedies, deaths in the family, and for God’s peace, among many other things.  We’ve seen God answer over and over in ways He is glorified by His amazing grace and goodness to us.  I believe the many prayers for Philip is what lead us on our path to Soma.  During the time of waiting God was teaching me many things: trusting in Him, patience, perseverance, mercy, and compassion.  He was also building a large support network for us and training me to eventually help others like Philip and our family.  

I have mentioned before how instrumental my autism support group has been in helping me discover Soma.  You can read about it here.  In the days leading up to our trip to Austin to see Soma for the first time, I emailed as many people as I knew, who knew about Philip, to pray for us.  I sent them a video link of Soma's segment on 60 Minutes and asked for prayer that Philip would respond to this method.  I myself was so nervous it wouldn’t work, but hopeful that it would.  Even though I felt doubt that it would work, I knew in my whole being that God could do as He pleased.  He could help Philip through Soma.  So I, along with countless others, prayed and prayed.  I know my Bible study met the Wednesday without me and spent a long time praying for us while we were in Austin.  I literally could feel their prayers as Philip went from tantrumming the previous day (Tuesday), his first time with Soma, to sitting through his lessons and amazing us with his knowledge that was tucked away from us all these years and just now releasing itself for the first time.  I came away with tears of joy each day.  

As you know, our lives have been changed for the better through God’s answers to prayer.  In the next few days I will post our letters of prayer and praise during our first trip to see Soma.

    Philip and his teachers from ISMILE